Hi everyoneI'm new to this site. I was diagnosed with ET about 6 years ago and I've been taking Hydroxycarbamide since then, which has more or less kept my platelets within reasonable limits. However the unwelcome side effects are that I've lost most of my hair and I regularly get painful mouth ulcers. My consultant is now going to add Anagrelide to my existing medication, with a view to reducing or phasing out the Hydrocarbamide if all goes well.
Does anyone have any experience of this, or how well it's likely to work? I'd appreciate any comments. Thank You!
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More recently interferon (IFN) is a top consideration for MPN therapy. It is worth discussing with your Dr. The version used for ET is Pegasys. Some who cannot tolerate HU do well on IFN,
Anagrelide can work well for platelet control but some reports show added risk with it.
For example:
"anagrelide induced a significantly greater increase in bone marrow reticulin than did hydroxyurea as well as a higher rate of transformation to myelofibrosis at 5 years.214 Interestingly, four patients who developed fibrosis while taking anagrelide showed regression when switched to hydroxyurea."
As EPguy mentions, there are other medications for treating ET. Pegasys is considered the other first-line option for ET. There are also second-line options like anagrelide and Jakavi.
While some people can tolerate hydroxycarbamide and benefit from it, not everyone can. I am also one of those who cannot tolerate it. I experienced toxicity even at very low doses. I experienced open oral ulcers, canker sores, constipation, thrush and leukoplakia. It took about three months for all of the side effects to resolve after I discontinued the hydroxy.
I have done much better on the interferons, Pegasys then switched to Besremi. Pegasys was more effective and much easier to tolerate for me than hydroxy. Note that we are all different in how we respond to these medications.
Suggest you review all of your options with a MPN Specialist. Hematologists with a sub-specialty in MPNs are more aware of treatment options for these rare disorders and better able to help you effectively manage the ET. Here is a list.
Thank you for your reply; that's very useful. My consultant recommended Interferon, but I gather that you have to inject it yourself? I hate needles! Is it easy and painless to do? Perhaps I could get used to it.
I have been injecting pegasys for several years now. The needles are very small. Most of the time I feel nothing. Sometimes a little sensation, very briefly, just as the needle goes through the skin, but then nothing. Certainly not pain. Just a slight feeling. I inject weekly. It has become a quick, easy routine. I too didn't like the idea of injections before I started but it didn't take long to get used to it. For me, it is much better and I am glad I made the change. As your consultant recommended it for you, I encourage you to try it.
I can't even watch injection needles on TV, I have to look away. Same for blood draws and shots.
But I do the Besremi needle with no problem. It's really small and I don't feel anything. The Pegasys needle is also small, much smaller and shorter than a blood draw needle.
In this endeavor size matters. So you'll be fine there if you are on IFN therapy.
Thank you to everyone who's replied. I'm encouraged to try Interferon. BUT I've just looked at the specifics, and epileptics can't take it? I have temporal lobe epilepsy (managed, with no symptoms for the last 20 years) so maybe not possible for me anyway.
I looked a bit into epilepsy and interferon. I can't find reports relating to the IFNs we use, Besremi and Pegasys. Have you found info relating to the type and doses we use? That would be good for members to know about.
The studies I found relate to Hepatitis therapy and were combined with Ribavirin. Most date to 1990's. In Hep use the doses were much higher than we usually use for MPN. Also much of this era used the non-pegylated IFNs which are harsher than what we use today. This doesn't mean your epilepsy is not a risk or that the modern IFNs are less so. It is worth discussing in detail with Dr.
Thank you. I got my information from the Guide to Interferon Alpha information leaflet put out by MPN Voice. I'd have to check with my consultant about the IFNs they use. I also notice that one of the common side effects of Interferon is hair loss. That's precisely what I'm trying to get away from. Taking Hydroxycarbamide has made me lose nearly all my hair!
It is the scariest list I've seen for IFN. It does refer to Pagasys (PEG) in MPN doses, so it is reasonably up to date and is the IFN you would use. It's missing Besremi so it's not entirely current.
This is the part you are concerned:
"Seizures (e.g. epilepsy) and/or other nervous conditions" "If you think you may have one of these conditions please discuss with your doctor. This may not mean you cannot have interferon, but it should be used with caution"
So it's allowed but requires extra care. I would like to know where they got this info, as it doesn't appear elsewhere for MPN to my knowledge.
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This part has my attention:
"Can I have vaccinations such as the flu jab whilst taking interferon?"
I recently had a very adverse reaction to the flu jab, I now have nerve damage from a mis-directed immune reaction to the shot.
I was on Hydroxy for about 3 years. Had more nausea and other side effects, but been taking Angrelide for more than 10 years and seems much better. Maybe we all tolerate things differently.
I would agree that Pegasys is not difficult to inject and you can probably have your local doctor show you how to do it. I was on hydroxy for 2 1/2 years and I have been on Pegasys for four months or so. I feel worlds better and only wish that I would have changed sooner.
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Change of hospital
Change Hydroxycarbomide to Pegasys? 
Change to pegasys 
Change from PV?
shortness of breath
